Last night, I read through the voluminous medical records we obtained from Bodie's Fontan stay. I lost count of the number of times his journey was referred to as a "complicated course," or how many times he was described as "well known to the CT team." It made my heart drop to realize that, even in the world of complex heart defects, where kids are complicated just by virtue of their diagnosis, Bodie is more complicated than most.
With cardiac defects, generally speaking, complicated is linked to poorer outcomes. No matter how much faith I have in God's plan, it is impossible for my mama's heart to lose sight of that fact.
I'm his mom. I just want to make all of this better for him. I want him to feel better, to be able to run and do all the things he wants to do without over-exerting his little body. He has been through 5 open-heart surgeries at this point. Doesn't he deserve that? But I can't make it all better. And I hate feeling helpless.
His sats appeared to be coming up a bit, but they dropped so low last night when he woke up that we actually put him on oxgyen, which was met with a horrendous screaming temper tantrum for over an hour in the middle of the night.
We spent the better part of the morning today at the CHLA Pulmonology clinic, which is full of well-meaning people who, in their own words "don't really know much about complex congenital heart lesions." It was tough having a conversation about the likelihood of Bodie's low sats coming from the shunting across his fenestration vs pulmonary hypertension when it's clear the doctor doesn't know much about either.
I walked into our appointment this morning so hoping for answers...and walked away with a big disconcerting NONE. What we do know is that cardiology says his issues aren't heart related so must be pulmonary in nature, pulmonology says his issues aren't lung related so must be cardiac in nature. Which leaves us with pulmonary hypertension. CHLA has a PH clinic! Say wha? Why are we just now learning this? Yay! Oh, but no - if we're lucky, we'll get in in maybe 2 months. Seriously?!?!? How is that even possible? I know they're busy and kids don't get referred to them unless they're really sick, but even so, Bodie can't wait 2 months for us to get to the bottom of it. We're hoping and praying they can squeeze us in sooner.
In other news, they're recommending a sleep study. To be honest, Bodie has always satted higher at night, so we're on the fence about even doing a sleep study (to determine how he's satting during sleep), but it apparently is Pulmonary's next go-to step, so they're asking us to consider it. It sounds like they would also like to do a cath, to see what exactly is going on and how the lungs respond to various interventions, to know how best to treat him post-cath. But that decision has to be made by the Pulmonary Hypertension team. Back to trying to get in to see them.
Oh, and they want us to consider putting him on oxygen to bring his sats up. We've already discussed this with Bodie's cardiologist and would prefer to hold off doing that right now, since he is such an active little dude and it would be a major lifestyle change. So we may be compromising and watching him, possibly putting it on overnight just to help him out.
So...we walked away with just as many questions as we walked in with...and a referral to the PH team. To say we're frustrated and worried is a massive understatement.
Please join us in praying for our little guy.
1. Pray that we can get his fast heartrate under control again, that his heart can rest.
2. Pray that his lungs settle down, and his sats come up. It happened post-Glenn and we firmly believe it can happen again post-Fontan. But we need to see SOME forward improvement, to know that his lungs are starting to settle down. Right now we're just not seeing much and that's what's making this so hard. PLEASE pray we see improvement soon!
3. Pray that we can get into the Pulmonary Hypertension clinic SOON and that they have answers for us.
4. Pray for wisdom for Dusk and I, to know when and how best to intervene to get the best care for our son, and to know what that care looks like.
5. Pray for our whole family - for Dusk and I and the stress this has brought into our household, and for sweet Sierra, who often gets put to the side when Bodie's medical issues come to the forefront.
Thank you, as always for loving our family and holding us up in prayer!
We will hold you up in prayer, Bennett Family. May God see you through this difficult journey and heal little Bodie's heart. God bless you all.ReplyDelete
Dios los bendiga familia Bennet.ReplyDelete
I've been following your blog and Bodie's journey for awhile. My son has tetralogy of fallot with pulmonary atresia, mapca's and pulmonary hypertension. There is an awesome FB group for parents of children with PH that is incredible. (there is also a general PH group that I don't think is so incredible, but the one for parents is awesome) It is a mixture of parents who's children have PH secondary to their CHD and children with idopathic PH and a few with other associated causes. It is a kind and loving group and they have proven to be an excellent resource of both knowledge and support for our family as our little guy developed PH two years ago. Check it out if you would like, or I can somehow make sure you the link if you are interested.ReplyDelete
Thinking of your family and especially Bodie!
My heart and prayers are with you family.....Keep going little warrior!....I'm sure you are going to be a strong and healthy kid....and your parents are going to see you running and laughing!!ReplyDelete
Praying for your family and your lil boy, to be well and for him to get the medical attention he needs to so you can get a good diagnosis and the proper treatment needed for his well being. God bless you Bennett family. .......ReplyDelete
Praying for Bodie. Thanks Camilo story for share thisReplyDelete
Praying fervently for your family! Big hugs Amy <3ReplyDelete
Praying for you all...1-5. Sending many many positive vibes and thoughts your way. I so feel for you. My heart aches just thinking of how difficult this must be for you. Stay strong, mamma. XOXO KristenReplyDelete
God bless you family Bennett, principally to the little warrior what is Bodie, the lord is whit and we praying for you... Family Espinosa from Monterrey, MexicoReplyDelete
Oh Amy. I am praying fervently for you all. I know how it feels to be searching for answers and feeling like you are getting nowhere. Huge heart hugs to you and your hero of a boy! Paxton sends high fives to his heart brother.ReplyDelete